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Community

The FASD and Child Welfare Community of Practice is an interprovincial project that connects with many different communities and stakeholders. Find out more about them below.

What is a Community of Practice?

The term Community of Practice implies shared skills and knowledge situated within a community and responding to a particular need or problem. In this project, our community includes:

Children diagnosed with or suspected to have FASD

Caregivers

Researchers

Service Providers

Policy-makers

We believe that sharing knowledge, skills, and experiences about FASD in our community is fundamental to develop competent tools in responding to FASD today.

Many people who have been touched by FASD directly or indirectly have raised concerns about the disorder's impact and about a lack of resources, information, and tools to support the affected communities. Some of these concerns are:

A lack of consistency in diagnosis of FASD

A high presentation of individuals with or suspected with FASD in our justice and child-welfare systems

A need for training, knowledge development, and knowledge translation within educational settings and in the community at large

A lack of generalized knowledge regarding the day-to-day care needs and severity of the neurological problems associated with this disorder

A lack of coordination among service providers, researchers, and policy makers in dealing with the FASD-related issues

This project intends to address many of these issues and bring greater awareness and more resources to our communities.

About our Communities

Those Living with FASD

People living with FASD have much to share in the conversation about FASD, as they are the ones most directly affected. This web site provides the opportunity for them to comment on recent news related to FASD, share strategies and resources, and learn from others. It is our goal through these conversations to raise awareness about issues and resources for people living with FASD.

Caregivers

It is not only children who are affected by FASD who need regular support in their daily lives, but caregivers too need support in order to care for the children effectively. This site is particularly dedicated to caregivers of children in child-welfare systems with (or who are suspected to have) FASD.

Caregivers’ activities in this project will provide a valuable contribution to our knowledge, enhancing our understanding of the needs of these children and providing new insights on how to effectively plan, implement, and evaluate services provided to those affected by FASD. This site will also provide links, information, and resources that can be helpful to caregivers.

Researchers

Our research team is composed of experienced professionals in various fields related to FASD and child welfare issues. The team consists of researchers from across Alberta, Manitoba, and Ontario who have carried out a variety of research endeavours that are relevant to this projects.

Service Providers

Many of the costs associated with caring for children with FASD are not manageable for caregivers and families of children living with FASD without additional support. These costs are both physical and economic:

National expenditures related to FASD are estimated to be about $5.3 billion per year

In the three provinces covered by this project (Alberta, Manitoba, and Ontario), service providers offer a variety of programs that address issues related to FASD. Goals of the programs may differ from one service provider to another, but include:

FASD prevention

Raising awareness about FASD and its effects

Providing skills and educational resources needed to care for children with FASD

Because there is currently no national approach to tackling the problems and issues related to FASD, most children and families affected by this disorder depend on community service providers’ programs and services for support and survival. We want to help children, families, and other stakeholders become aware of programs and services available in their communities.

Policy-Makers

Public policy can be used to address many of the challenges faced by those living with FASD and those caring for them. It is hoped that this project will provide knowledge and experience which will be of use to policy-makers in creating effective strategies to assist all communities in dealing with FASD.

Our Story

The FASD and Child Welfare Inter-Provincial Community of Practice is intended to create a national network to inform policy makers, program developers, and practitioners about the needs of children with FASD in the care of child welfare jurisdictions and agencies, as well as early intervention practices.

Project Goals

This FASD Initiative hopes to provide:

FASD prevalence data

Needs assessments

Empirical knowledge relating to maternal/child health, health, education, and social policy makers as well as service providers all across Canada.

Providing such information has great potential in assisting federal, provincial, and local policy- and decision-makers in how to allocate limited resources more effectively. The project also provides a rich contribution of knowledge to inform some of the research and development efforts of the inter-sectoral organizations working in this area.

The goals of the FASD Child Welfare Interprovincial Community of Practice are to:

Describe, compare, and contrast current policy, practices, standards, and services with regard to children in care with FASD

Develop a common approach to evaluating prevention and early intervention program initiatives

Develop methodologies and tools to conduct a prevalence and cost study on children in care with FASD

Our project is intended to help inform policy makers, service providers, and researchers about the unique needs facing children with FASD. We also want to provide information on:

New FASD-related research initiatives

Best practices

Practice innovations

that can inform work within child-welfare systems across provinces. We will provide our membership with an opportunity to blog and chat about issues related to caregiving, best practices, and research. Finally, it is hoped that this work will improve the lives of children—our future generations.

Building expertise within the community and developing common language, tools, and processes

Encouraging innovation within the community

Informing practice and policy

The goals of this initiative align well with the objectives of National Strategic Projects Fund. Among the major strengths of this project is its potential to promote collaboration, coordination, and knowledge uptake in policy development, data collection, evaluation, and practice for youth in care across three provincial jurisdictions. Ultimately, this project will contribute to the development of stable and nurturing home environments for children and youth with FASD; something so vital to ameliorating the well-documented long-term negative outcomes and their considerable personal, familial, community, and societal cost. It is our hope that these benefits will be seen at both provincial and national levels.

Partners

Who We Are

We are an interprovincial project developed by the following research partners and collaborators:

Alberta

Child and Family Services Division, Alberta Human Services

Faculty of Social Work, University of Calgary

Manitoba

Manitoba Family Services and Corporate Affairs

Faculty of Social Work, University of Manitoba

Ontario

Child Welfare Institute, Children's Aid Society of Toronto

Factor-Inwentash Faculty of Social Work, University of Toronto

This project was initiated and sponsored by the Child Welfare Institute,
Children's Aid Society of Toronto and funded by the Public Health Agency of
Canada. The Children's Aid Society of Toronto is an incorporated
not-for-profit agency governed by a volunteer board of directors and
funded by the Province of Ontario, and is one of the largest
child welfare organizations in Canada. The organization's core mandate is to
protect children from harm.

The Team

Leadership Team

Dr. Deborah Goodman, MSW, RSW, Ph.D., is the Manager of Research & Program Evaluation at the Child Welfare Institute at Children's Aid Society of Toronto and holds a status position as... Read more

Dr. William Pelech, PhD, RSW is a professor in the Faculty of Social Work and lead co-principal investigator on the FASD Community of Practice Research. His practice focus has primarily been in the area of rural and... Read more

Don Fuchs is a full professor at the Faculty of Social Work at University of Manitoba. He has conducted extensive research on the role of social network and social support in strengthen families... Read more

Dr. Dorothy Badry, PhD, RSW is a professor in the Faculty of Social Work, University of Calgary, and lead co-principal investigator on the FASD Community of Practice Research. Research interests focus on... Read more

Sharon Long, BA, BSW, RSW, joined Alberta Human Services in 1981 after completing her social work degree at McGill University. Her thirty-two year career in Child Intervention/Child Welfare has afforded her the opportunity to work in ... Read more

Research Team

Our research team is composed of experienced professionals in various fields related to FASD and child-welfare issues. The team consists of researchers across the project's three provinces of Alberta, Manitoba and Ontario. These researchers have carried out a variety of research that is relevant to this project.

Canada FASD Research NetworkThe Canada FASD Research Network (CanFASD) (formerly known as the Canada Northwest FASD Research Network) is a formally and informally connected group of professionals from a range of research sciences across Canada. Their mission is to create a collaborative environment to produce research leading to FASD prevention and significant improvement in the lives of affected individuals, families, and communities.

Fetal Alcohol Spectrum Disorder Ontario Network of Expertise (FASD-ONE)The FASD Ontario Network of Expertise is a group working to address issues related to Fetal Alcohol Spectrum Disorder (FASD) in Ontario. Its membership includes experts in research, health promotion, diagnosis, justice services, community and policy development, and service delivery as well as family members of those affected by FASD.

About FASD

What is Fetal Alcohol Spectrum Disorder (FASD)?

Fetal Alcohol Spectrum Disorder (FASD) describes a range or disabilities caused by prenatal exposure to alcohol. These disabilities include neurodevelopmental problems and cognitive, behavioral and physical disorders. The designaton "FASD" is meant to collect together various disabling conditions falling in the category of spectrum disorders within the Canadian Diagnostic Guidelines.i ii iii iv These include:

Fetal Alcohol Syndrome (FAS)

Partial Fetal Alcohol Syndrome (pFAS)

Alcohol-Related Neurodevelopmental Disorders (ARND)

Alcohol-Related Birth Defects (ARBD)

Why should we be concerned about FASD?

Prevalence

Fetal Alcohol Spectrum Disorder (FASD) has been identified as a major public health concern in Canada.v Too few studies have been done on the prevalence and incidence of FASD in Canada, because there is no consistent framework to establish FASD prevalence in Canada.viii According to Public Health Agency of Canada in a 2005 report, nine out of every thousand babies born in Canada have FASD,vi which means 3000 babies are born with FASD per year.vii Some studies in Canada suggest that FASD prevalence is higher in children in care and Aboriginal communities.

It is anticipated that our project will support the development of models and make recommendations for prevalence data gathering. ix x xi

Social and Economical Costs

The costs associated with FASD to society are high. It is estimated that it costs $1.5 million for every person with FASD,x and the cost of FASD to the Canadian government is millions of dollars every year. Although these estimates exist, work is required to create an accurate overall national profile of costs.xv The Institute of Health Economics has undertaken this evaluation from a Canadian perspective.

Aside from the financial costs, the social costs in relation to the lives of children and families living with FASD are great. They suffer psychological and emotional distress, particularly due to the disorder's neurological effects. Because of the cost and challenges related to caring for children with FASD, many of these children end up in the child-welfare system.xii xiii xiv While there are few studies which have gauged prevalence of FASD among children in care, one study reported prevalence rates that were 10 to 15 times higher than the general population, which has social and economic implications for caregiving.xv